Is bioethics a challenge to ethical theory?
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Bioethics↗
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Results for “Truth Disclosure”
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Informed consent: information about the physician.
Does the doctrine of 'informed consent' require disclosure about the physician? Recent developments indicate that the doctrine requires information not only about the treatment but also about the physician. There is also modification in the requirement of proof of a causal nexus between the lack of informed consent and injury.
Acquired Immunodeficiency Syndrome↗
Patients' perceptions of the quality of informed consent for common medical procedures.
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Adult↗
Trust, The fragile foundation of contemporary biomedical research.
It is widely assumed that informing prospective subjects about the risks and possible benefits of research not only protects their rights as autonomous decisionmakers, but also empowers them to protect their own interests. Yet interviews with patient-subjects conducted under the auspices of the Advisory Committee on Human Radiation Experiments suggest this is not always the case. Patient-subjects often trust their physician to guide them through decisions on research participation. Clinicians, investigators, and IRBs must assure that such trust is not misplaced.
Advisory Committees↗
Relationships among perceived diagnostic disclosure, health locus of control, and levels of hope in Taiwanese cancer patients.
OBJECTIVES: To explore relationships among perceived diagnostic disclosure, health locus of control, and levels of hope in Taiwanese cancer patients. RESEARCH DESIGN: A cross-sectional, descriptive correlational design was used in this study. One hundred and twenty-four (N=124) patients were recruited. The Background Information Form, the Multidimensional Health Locus of Control (MHLC) Scales, the Herth Hope Index (HHI), and patients' medical records were used. Data were analyzed using descriptive statistics, t-test, ANOVA, Chi-square, Pearson's correlation, and multiple regression. RESULTS: The major findings of this study are as follows: (1) overall, cancer patients had medium levels of hope; (2) patients who were aware of their own diagnosis reported significantly higher levels of hope than those who were not informed of their own diagnosis; (3) patients who were aware of their diagnosis tended to have higher levels of the internal locus of control than those who were not informed; (4) the internal health locus of control was significantly positively related to levels of hope; (5) the chance health locus of control was significantly negatively related to levels of hope. CONCLUSIONS: The results of this study provide important implications for Taiwanese clinicians concerning the practice of diagnostic disclosure of cancer to patients.
Adult↗
Issues in the accessibility and confidentiality of patient records.
Traditional understandings of confidentiality are no longer sufficient to deal with the privacy issues raised by a modern health care system. Patient data are increasingly kept by large and relatively faceless institutions. Disclosure of health information is not an exception, but a matter of daily routine, not only for uses within the health care system itself, but also for various social purposes. This paper highlights a number of issues, related to these structural changes. A distinction is made between four main problem areas: basic issues, collection and keeping of data, patient access to records, disclosure of individually identifiable data. Under each heading, four issues are discussed.
Confidentiality↗
A family of trust: African American parents' stories of adoption disclosure.
Dramatic increases in same-race adoptions of African American children have stimulated interest in the experiences of these families, including those related to disclosure. Data from interviews with 27 African American adoptive parents (7 mothers and fathers interviewed conjointly, 13 mothers interviewed alone) from 20 different families revealed the following themes: (a) efforts to prevent trauma to the child; (b) respect for the child's differentness and birth history; (c) developmental decisions in disclosure; (d) children's questions as motivations for disclosure; and (e) parents' feelings about disclosure. Findings confirm the importance of psychoeducation regarding methods and timing of disclosure and provide support for comparative research on contemporary disclosure, including racial differences in process and content.
Adolescent↗
Disclosure of HIV/AIDS diagnosis to HIV-infected children in Thailand.
BACKGROUND: With the availability of highly active antiretroviral therapy, more HIV-infected children have lived longer. Many children are at the age that they should know the diagnosis. AIM: To identify the prevalence and patterns of disclosure of HIV/AIDS diagnosis to HIV-infected children. METHODS: A cross-sectional study was conducted among 103 main care givers of HIV-infected children aged > or =6 years who received highly active antiretroviral therapy at Chiang Mai University and Sanpatong district hospitals, northern Thailand. RESULTS: One-third (30.1%) of the children knew their HIV/AIDS status at an average age of 9.2 years. The care givers' understanding of 'knowing' did not always mean that the children were told the name of 'HIV' or 'AIDS'. Many of those care givers (84.3%) who reported that the child did not know their diagnosis had inaccurately explained to the child that he or she had some kind of disease such as allergy, lung, or liver disease. The most common reason for non-disclosure was the fear that disclosure might have negative psychological consequences to the child (53.4%). Almost all (88.7%) agreed that they should tell the children their diagnosis in the future but half needed health-care providers to help them at the event. CONCLUSION: There is a need for the development of disclosure guide-lines and models for health-care providers and care givers as there was a high rate of inaccurate disclosure and, in addition, care givers expressed their need for assistance from health-care providers for the future disclosure.
Acquired Immunodeficiency Syndrome↗
Why disclosure of genetic tests for health insurance should be voluntary.
Whether the disclosure of genetic (and non-genetic) information should be mandatory or voluntary is of concern. At present there are two opposing camps--the insurance industry argues for mandatory disclosure to avoid problems of adverse selection, and genetic interest groups argue for voluntary disclosure, fearing discrimination and public reluctance to have tests, thus missing out on any benefits from subsequent interventions. Policy has to balance these sides of the debate, as reducing adverse selection and encouraging maximum take-up of tests are both important for public health. We outline why voluntary disclosure is the optimal policy as it creates an incentive for people both to undergo testing and to disclose their result thus reducing the potential for adverse section.
Genetic Testing↗
A test of two HIV disclosure theories.
The purpose of this study was to examine two theories of HIV disclosure. The first is a disease progression theory and the second is the theory of competing consequences. Participants were 138 HIV-positive gay men involved in a larger study of HIV disclosure. Structural equation modeling was used to analyze each model, with the root mean square error of approximation (RMSEA) and the nonnormed fit index (NNFI) used to evaluate goodness of fit. The RMSEA for the disease progression model was .031 and the NNFI was .932. The RMSEA for the consequences model was .018 and NNFI was .978. Both indices are considered to be a close fit; however, the parameter estimates for disease progression to disclosure in the disease model and disease progression to consequences in the consequences model were nonsignificant, suggesting that disease progression may not play a role in the decision to disclose an HIV diagnosis. Researchers may want to focus on the intentions and possible outcomes from disclosure as predictive factors.
Acquired Immunodeficiency Syndrome↗
The specificity of maternal disclosure of HIV/AIDS in relation to children's adjustment.
Disclosure experience of 58 HIV-seropositive women was examined as a multi-faceted process comprising eight variables: level, seriousness, breadth, frequency, source, secrecy, age at first disclosure, and time since disclosure. The majority of children (57%) were told that their mothers had HIV/AIDS and were given additional information about mothers' health (64%) including prognosis of potential death (68%). Most were disclosed to by their mothers (75%) and were not asked to keep disclosures secret (66%). For most (68%) discussion regarding mother's health was infrequent. Children, on average, were first disclosed information at age 7 and had been aware of information for 3 years. Disclosure characteristics were related to demographics of mothers and children. Hierarchical multiple regression analyses showed that children asked to keep disclosures secret tended to display more behavior problems than children not asked to keep secrets. However, the specificity of disclosure did not otherwise predict children's adaptive functioning.
Adaptation, Psychological↗
Presymptomatic testing for Huntington chorea: guidelines for moral and social accountability.
Clinical trials of a presymptomatic test for Huntington chorea (HC) are beginning, and the test may set precedents in screening for other genetic disorders in this way. Therefore, it seems an opportune time to consider the moral and social implications of such testing. The strategy proposed here takes the form of guidelines for research, development, and clinical application of the HC test and any future similar tests. The guidelines cover four stages (preliminary research, verification, refinement, and clinical application). They draw on past experience, on existing guidelines for research involving human subjects, and on some general moral and legal principles. In addition to traditional concerns about relationships between counselors and consultants, they emphasize more contemporary concerns about the interests of third parties and social institutions in what occurs in modern methods of genetic screening. In all cases, however, the guidelines are provisional and are offered here mainly for purposes of discussion and to encourage similar efforts at policymaking by those who become involved with these forms of testing.
Age Factors↗
Ethical problems in prenatal diagnosis: a cross-cultural survey of medical geneticists in 18 nations.
In order to provide a basis for international discussion of ethics among geneticists, we surveyed the responses of medical geneticists to a questionnaire describing 14 hypothetical cases that posed ethical dilemmas. The cases were selected through discussions with leading geneticists in 12 nations, as representative of the most difficult problems of moral choice experienced in practice. Six cases involved indications for prenatal diagnosis or disclosure of information. All medical geneticists in each of 18 nations were included. Of 1053 asked to participate, 677 (64 per cent) responded. A large majority (83 per cent) would perform prenatal diagnosis for parents who oppose abortion but request the service. A smaller majority (63 per cent) would do so for maternal anxiety, and a minority (25 per cent) would perform for sex selection in the absence of X-linked disease. Most would disclose conflicting controversial, or ambiguous test results, and two-thirds would disclose colleagues' differences of opinion.
Beneficence↗
Ethical guidelines for the use of human embryonic or fetal tissue for experimental and clinical neurotransplantation and research. Network of European CNS Transplantation and Restoration (NECTAR).
Recently a Network of European CNS Transplantation And Restoration (NECTAR) has been founded, aimed at a concerted effort to develop efficient, reliable, safe and ethically acceptable transplantation therapies for neurodegenerative diseases, in particular Parkinson's and Huntington's disease. Owing to the use of human fetal brain tissue in such studies, usually obtained from elective abortions, ethical concerns have been focused on the relationship between abortion and transplantation activities. There is no uniform code on the retrieval and use of human embryonal or fetal material for experimental and clinical research or application in Europe. NECTAR has therefore formulated self-restraining ethical guidelines for its European member groups. These guidelines consist of a series of restrictions intended to prevent the use of grafts from encouraging induced abortions and to maintain high standards of respect for life and human dignity. In order to support applications for human embryonal or fetal neurotransplantation studies of NECTAR member groups to local or national medico-ethical committees, and to stimulate the goal of obtaining European legislation on this issue, the guidelines are here presented. They are followed by extensive explanatory notes. Only in this public manner can the lines of thought behind these NECTAR guidelines be addressed critically by those working in the fields of biomedical ethics and legislation as well by politicians and the general public.
Aborted Fetus↗
The patient's right to information in Japan--legal rules and doctor's opinions.
A questionnaire survey concerning informed consent was administered among Japanese physicians in Yamaguchi prefecture. The survey results showed that even though these Japanese physicians are willing to give their patients sufficient information to obtain informed consent, the discretion of the physician to provide information is still prevalent. The survey also revealed that Japanese physicians believe that information regarding the treatment to be administrated should be fully disclosed both in case when the treatment is still experimental and when it is established among specialists. Finally, the survey showed that despite the liberal attitude of the Japanese physicians toward informed consent, they are reluctant to make medical records accessible to the patients. It was found that when Japanese physicians were faced with special cases such as prior to administering high-risk diagnostic procedures, prior to disclosing the presence of cancer in their patients, or when faced with patients unwilling to receive treatment, the involvement of the patient's family members in the decision-making process was preferred so as not to aggravate the patient's emotional anxiety. With respect to cancer patients, the survey suggested that many Japanese physicians believe that cancer operations performed without informed consent from the patient should be legal. Finally, the survey concluded that, although the concept of individualized informed consent has been generally accepted among physicians, the involvement of family members in the decision-making process and a conservative attitude toward disclosure of information are still prevalent in Japan.
Adult↗
Measuring physicians' tolerance for ambiguity and its relationship to their reported practices regarding genetic testing.
Despite uncertainties in medicine, attempts to study physicians' tolerance for uncertainty have been few, and limited by the measurement instruments available. This paper describes development of a modified tolerance for ambiguity (TFA) scale, and correlates it with several physician characteristics and reported behaviors. Eighteen TFA items were included in a national survey of physicians' knowledge and attitudes about genetic testing. Sixty-five percent (n = 1,140) of 1,759 obstetricians, pediatricians, internists, family practitioners, and psychiatrists responded. After psychometric analyses, the scale was reduced to 7 items, demonstrating an acceptable reliability (Cronbach's alpha = .75). TFA was higher among psychiatrists than other specialties, among those who were older when they graduated from medical school, and among those willing to offer a new low-cost, accurate predictive test when none of their colleagues do. TFA was lower among those who indicated that attendance at religious services was important, among those who would make a recommendation to their patients regarding pregnancy termination after prenatal diagnosis, and among those who would withhold negative genetic test results. Future research is needed on the scale itself, and to assess factors affecting TFA, such as its susceptibility to modification, and its potential association with clinical practice in other areas of medicine that are characterized by ambiguity.
Abortion, Therapeutic↗
Whistleblowing: a very unpleasant avocation.
This article presents a first-person account of the events surrounding the investigation and sanctioning of Stephen E. Breuning for scientific fraud. The adverse consequences to the whistleblower in this case are also discussed in detail.
Behavioral Research↗